Living with multiple sclerosis

Living with MS is not easy. Everyday life becomes challenging; an uphill climb.

I suffer from multiple sclerosis. I also suffer from a cocktail of other ailments that such abbreviations bring. However you never know what or which. You spend endless hours every week with new symptoms that could fit into other definitions. There is a concoction of medications and an assortment of supplements that promise good health, but is there ever hope?

Never.

Hope is about knowing that the disease will go away. Hope is for the foolish. Here, there is fighting; there is preparedness; and there is perseverance. I must live as the capacitor that can store every iota of strength for my depleting years ahead.

I will persevere.

How do I begin to tell you my story? There is an ocean of words behind every one that I will write. I do remember that routine afternoon when things changed.

I was working on an art project on my computer when suddenly, I saw a strange grey blur around everything. We visited a number of ophthalmologists after this, only to be dismissed repeatedly that I was imagining my vision changes. Ultimately, the mind numbing headaches, the dimming vision and a lot of online help led me to believe I had optic neuritis. I felt pain when I moved my eyes, a pressure on my eyeball like it would explode and loss of colour; over the next few weeks my world became dimmer and dimmer. Ultimately, the edges around everyday objects began to separate, and I began to see two of everything.

After a painful wait, seemingly unintelligent doctors, we finally met a neurologist who told us about optic neuritis. Optic neuritis is inflammation of the optic nerve, which carries visual information from the eye to the brain. If the nerve gets inflamed, it damages the insulation around it (the myelin sheath) and may result in permanent vision loss.

That night, as my sister and I poured over the internet, we came across a website which warned that this is a fairly common symptom of multiple sclerosis (MS). I knew MS was something sinister, but nothing beyond that. The ground beneath my feet shifted. We shut the laptop and went to sleep. Unfortunately for me, as I bent my neck forward that night, an electric shock ran down my spine.

The Lhermitte’s sign, which confirms the neck part of the spinal cord has been affected by MS; the other shivers were my own. Knowing that something was wrong, but praying otherwise, I went in for my MRI. Lesions on my brain shined white on my MRI scans. They indicated scarring (sclerosis) in my brain where destruction of the protective myelin sheath had taken place. A further physical examination by the neurologist led to my diagnosis. I held his gaze when he told me. I accepted it easily enough. He must have put me in the box marked denial.

Learning about your disease is the easy part; living with it is a whole different monster.

The first step was to do something about the vision. I was put on intravenous corticosteroids, and gradually but surely the world came back into focus by my third dose. I learnt I had relapsing-remitting MS – the good kind. Basically, my immune system was attacking itself and the protective layers (myelin) around my nerves were getting destroyed.

In medical terminology, this demyelination impairs the nerve functions of interpreting and receiving signals from the brain. Vague symptoms of demyelination in the brain sometimes begin long before the disorder is diagnosed. For example, tingling, numbness, pain, burning, and itching may occur in the arms, legs, trunk, or face. The sense of touch may be reduced. People may lose strength or dexterity in a leg or hand, which may become stiff. Often the disorder slowly worsens, disabling some people, but life span is unaffected unless the disorder is very severe. Luckily for me, I would have periods of relatively good health alternate with episodes of worsening symptoms. As recovery during remission is good but incomplete, the disorder worsens slowly over time.

Since symptoms vary widely, sometimes people can go years before a diagnosis and therefore don’t receive treatment before much damage has already been done. There is no known cure for the disease. Patients are instructed to count on disease modifying agents that help prevent new attacks. As of 2011, six disease-modifying treatments have been approved by regulatory agencies of different countries, including the US Food and Drug Administration (FDA), the European Medicines Agency (EMEA) and the Japanese PMDA. The six drugs are interferon beta-1a (Avonex, Rebif), interferon beta-1b (Betaseron), glatiramer acetate (Copaxone), mitoxantrone (Novantrone), natalizumab (Tysabri) and fingolimod (Gilenya), the first oral drug available. In Pakistan, Bayer Healthcare is providing a holistic solution by ensuring a consistent supply of Betaseron, home based nursing support for administering the injections, and physio-therapy. The drug is equally hard on the body, mimicking flu like symptoms to the extreme.

I took these injections for several months, then gave up. The drug was debilitating. In Pakistan, people who do not respond to Betaseron have to find ways to manage supply for other drugs which are not available through a dependable source. And doctors cannot help much further. Support groups are limited and mostly inactive. There is an MS support page for Pakistan on Facebook with 21 likes.

It is not that MS is uncommon in Pakistan. Infact researchers from Aga Khan University have just published data from the first in-depth study of multiple sclerosis in Pakistan, enrolling 142 patients. It is usually that people with MS don’t like to talk about it. The disease is hard to explain. There is little knowledge about it. Reactions may be hard to manage. Also, supporting other MS patients requires massive reserves of energy. People going through anger, frustration, denial, and depression make a hard disease harder to cope with. And so, many MS awareness months have passed silently by.

Living with MS is not easy. Unusual and sudden fatigue, numbness, tingling, a reduced sense of touch, pain or burning, itching, dim or double vision, weakness and clumsiness, difficulty walking or maintaining balance, tremor, uncoordinated movements, stiffness, unsteadiness, problems controlling urination and bowel movements, mood swings, inability to control emotions, mental impairment, memory loss, poor judgement and inattention are some of the varying symptoms of MS. Everyday life becomes challenging; an uphill climb. Planned events become harder to plan and predict.

I read up a lot but I was not ready for it; the heavy swing of a pendulum that will hit you each time with something frightening. I remember the first time my energy left me. Urgently and without warning, like being hit by a truck on a beautiful morning. Willing my arms to move, and my legs to listen; first lovingly, then angrily. The time when I could listen to the words of a loved one but could not put them together. Or the time when I got stuck in a moment with no idea about what had happened before and what was coming later. Living with crushing pain, yet interacting with people at home and work with a smiling countenance. Doing your how-do-you-dos, with endless pills. Just keep going, says a voice. Going mindlessly at times. Wondering what it is like to be in another body. Sometimes the smiles run out.

How can you explain to someone, something that doesn’t have a fever, or that doesn’t bleed. How many times I have heard the words, “But beta, you look fine!”.

How do you explain to the loving and demanding relationships you have created around you?

dearest Sarah amazing you are a very brave girl and we all lov you. you are a gem of a person who loves others and is loved by others.your strength to bring your ailment in open is amazing, may allah almighty give you,your family and omar all the strength to face this time and come out of it with smiling faces putting everything in past. may allah be with you give you health and may allah always keep up your spirits. with lov bari maryam.Recommend

Clare Fowler

Beautifully written account of very clever patient. I wish her well.Recommend

Dante

Dear Sarah,

National Institutes of Health, USA conducts several clinical trials for virtually every disease. Multiple sclerosis is one of them. They actively recruit both American nationals and internationals. Travel and lodging within US is fully compensated (international travel is not). All treatments, medications, radiology studies and neurologists’ clinical evaluations are also fully compensated.

If you are interested, you may want to check it out. The only problem would be for you to travel a very long distance to America, that is not paid for by NIH. The contact info is given in the link. The branch conducting these trials is National Institutes of Neurological Disorders and Stroke (NINDS).Recommend